Return of PMR

[Manderson]

My last prednisone after about 5 years PMR and tapering was October of 2023. I still continue to regularly go through the published postings and replies.

I went through all of the fatigue & pains going through the "waking up the adrenals" phase and tapered very slowly to zero and had about 16 months without prednisone - although I always travelled with it.

I have been gradually increasing my yardwork (that is my favorite home pastime), taking a rest day when needed.

About February of this year (2025), I noticed muscle pain that seemed different than that from just working around the yard (bending / stretching etc.) I began to realize the the new pain was daily, not just after yardwork.

I approached my PCP with a request for 10 mg pred to be taken daily for a week, tapering to 5 mg for a week and the going to 3 mg for a longer time. After ERP / Sed rate blood tests he agreed (ERP was 50% above normal range and Sed rate was very normal)

10 mg after day 1 took care of the pain and so i realized that it was the return of the PMR.

5 mg also took care to the daily pain.

Have now been on 3 mg for about 2 weeks - split 2mg in the night (2AM) +/- and 1mg in the afternoon (2PM +/-). I have generally been fine.

Through all of this I have continued to do some yardwork everyday - I have never given up on my newly discovered - thanks to PMR - afternoon rest/nap time....

Recently I have been getting pain in the upper back / neck in the evenings, that increases as the evening goes along. I have been taking long acting Tylenol and have been able to get relief.

Wondering if I have over shot my need for prednisone?

Really do not want to get above the "adrenal sleep" range but, of course if needed, then OK.

Your thoughts?

Mark

[DorsetLady PMRGCAuk volunteer]

Wondering if I have over shot my need for prednisone?

Sounds suspiciously like it, and if yiu do nothing it’s likely to get worse. I’d be inclined to try upping to a total of 5mg per day [how you split is up to you, but probably 3 &2]- and hope that’s enough to get things back under control. May be, may be not. You won’t know until you try.

[Manderson in reply to DorsetLady]

👍 thanks so much!

[piglette]

I agree with DorsetLady. Increase your dose a bit and see if you can hit the PMR on the head.

[Manderson in reply to piglette]

Will start at 3 mg this afternoon and then 2mg at 2 AM. Thank you both kindly.

[PMRpro Ambassador in reply to Manderson]

You would be better to increase the 2am dose - all the inflammatory substances are shed in the body in the early morning so the 2am dose is designed to deal with that early morning surge in inflammation.

[PMRpro Ambassador]

I agree with DL - if you are on too low a dose, you run the risk of things worsening and requiring a higher dose of pred for long enough to suppress adrenal function.

Do you NEED to split the dose? Taking 5mg in the morning should make it fairly unlikely adrenal function would be affected - the significanct factor is a very low level of pred in the blood at midnight. Though theoretically, 1mg in the afternoon should be fine.

[Manderson in reply to PMRpro]

I always took my whole dose in the early AM as suggested with respect to the surge. Last week when the new pain started later in the day, I thought that perhaps the effectiveness was reduced and was not enough later in the day. I will try 5 mg in the early AM for a week or so to see if a change is noted. Thank you both for your wisdom and care for all of us.

[HeronNS]

I had a, much shorter, only a few weeks, time off pred in mid-2020 and after wasted effort trying to stay at my previous low dose again I ended up with a major flare late that year. The best way to deal with it I found was in fact to take my whole dose (which by then was up to 8 mg!) at 2 am. Had everything ready to hand, the pills, water, and plain yoghurt in a cup with a spoon. Nearly always fell quickly back to sleep afterwards. It was early 2024 before I was properly in remission and off pred although long before then I'd been able to go back to the morning dose which is supposed to be better for the sake of adrenal function. 🍀

[Manderson in reply to HeronNS]

Thank you for your response. I took 3mg at 2AM with a bit of cottage cheese and protein drink. Immediately back to sleep and woke up at my normal time, refreshed. I will take 2 mg this after noon and then go to 5mg tomorrow at 2 AM and try back to once a day as suggested.